Tuesday, July 9, 2013

Healing by Helping Others

By Bassey Ikpi

In December 2011, I launched a global non-profit organization called The Siwe Project. It was named for Siwe Monsanto, the 15 year-old daughter of a good friend. I’d known Siwe since she was 4 years old so I was aware of her ups and downs. However, it still came as a shock when in June of 2011, she took her own life. As a black woman, I understood the stigmas and shame that came with mental illness. I understand that all cultures have issues dealing with and understanding mental illness, but I also know that the global black community has specific ways of dealing with illness, in that, we rarely deal with it. Siwe was lucky to have an amazing mother who dedicated her life to helping her but many aren’t so fortunate. The Siwe Project was born out of a need to help people like Siwe have a place to begin the conversation and tell their own stories. My reasons for taking on this endeavor were also selfish; I needed a place to feel a sense of community as I managed my own illness. I was diagnosed with bipolar II disorder at the age of 27. I’d struggled for most of my life trying to understand who I was and why I couldn’t ever seem to get it together. I began to notice that there was something “different” when I was 8 years old.

I didn’t fully understand it at that age. I just knew that there was this uneasiness that followed me around. I just knew that I cried sometimes but wasn’t sure why. I just knew that I couldn’t sleep some nights. I’d get dizzy and lightheaded and my stomach would rage out of control. And then there was the sadness; that inexplicable melancholy that sat on my chest from time to time. I’d be fine and then out of nowhere the tears would start.

I was constantly heartbroken by the world. In the third grade, the Space Shuttle Challenger exploded. We were in Mrs. Zeroski’s class watching it as it happened. I remember the entire class burst into tears, even our teacher was openly weeping. I cried too but something else happened, something broke and I couldn’t drag myself out of the sadness. Days, weeks, months went by and I was still broken. I stayed up at night obsessed with how I could have stopped it; even wondering if I had caused it somehow. Was it that spelling bee that I fumbled? Was it the track meet I lost?

I didn’t know of anyone going through this but me. So on top of everything else, I was weird. I tried to mask it by being funny, smart, a great dancer, the kid everyone liked despite it all. People were always commenting on my “bubbly personality.” In high school, it was easier to keep at bay. I had figured out what “normal” was and emulated it to the best of my ability. Whenever the sadness came, I pushed it away. When the frantic rush of energy came, I stayed up all night reading my textbooks from cover to cover and writing. It helped my grades. And if my grades were good, then nobody suspected that I was falling apart.

And then college happened and every trick I had stopped working. When my peers were exploring their sexuality and freedoms, I was huddled in my dorm bed, a mess of trembling and tears, confused and distraught about everything and nothing. I still put on the smile and the laughs when I could face people. When I had to retreat, they all thought it was because I was focused and studying. That first semester of college, I returned home with a 0.0 grade point average. I was put on academic probation for the first time in my life. My parents were convinced that I was on drugs or suddenly promiscuous.

What they didn’t know was that since I was 8 years old, I never let myself see past the next 12 months. I was so afraid that if I planned for more, I’d have too much to lose. So I made no plans. I wasn’t building towards any future. I wasn’t sure I’d have one. When college became too much, I dropped out with no plan and no money and moved to New York City. And once again, I was good for a little bit.

But the symptoms of my illness didn’t go away. There were bouts of hypomania. (Remember the first time you were on a Ferris wheel? Remember when you got to the very top and kind of just sat there for a little while, the entire world at your feet? You felt like you could touch the sky. Your entire body was tingling with this amazing sensation of joy. You were giddy. Now imagine feeling that every day for a week or a month or a few months, 24 hours a day, 7 days a week with no break. No "down." No rest. That’s hypomania.)

There were also bouts of depression, for which I was hospitalized twice. The first time was in 2004. I’d had a breakdown while on a national tour. I became quiet and withdrawn. I stopped eating and sleeping. In Chicago, our wardrobe lady found me in my dressing room, huddled underneath the sink weeping. I was sent home the next day. Before I left, our stage manager, Alice, gave me a list of doctors to call when I got back to Brooklyn. I remember how she hugged me and said, “If you don’t get help Bass, you’re going to die.” Her words settled into my bones the entire flight back to New York. Over the course of the next seven days, I received a diagnosis of bipolar disorder. I’d heard of bipolar. I’d seen the stories of “crazy people” running down the street naked or forgetting to feed their children, but I didn’t see myself in those people so I shrugged off the diagnosis. I took antidepressants and a mood stabilizer for exactly one month; I figured I’d be cured by then and allowed to go back on tour and resume my life and career. But, I was told I couldn’t return to the tour. I was a liability. I was too unstable to continue. What I heard was, “You’re broken. You can’t be fixed.”

To say it’s frustrating is to minimize how paralyzing it can be. And then there’s the shame; you have to decide who to reveal your struggle with and when. If I meet someone I’m interested in, do I tell them that sometimes I shrink away or do I wait until it happens? Revealing too much too soon can end it before it begins; waiting too long results in confusing behavior that ends things as well. No matter how you play, someone isn’t going to understand.

Through it all, I’m currently managing my illness. Staying on meds has been a problem. I start feeling better and convince myself that I don’t need it or I can skip a day or two or 30. I’m most likely going to be on meds for the rest of my life. I have to be okay with that. I’m not often okay with it, but the alternatives are worse so despite how tedious and annoying it is to take the pills, I do it. People often tell me that without this illness, I wouldn’t be the writer or the personality that I am now. I’m not sure how true that is. I am who I am despite the illness not because of it. Just because I manage and have found a way to live with this, does not mean that I wouldn’t trade all the writing and creativity and “bubbly personality” for a brain that settles and mends itself like it’s supposed to.

Like so many physical diseases and disorders, getting it under control is the key. Taking care of your mental health is just as important as taking care of your physical health. I wish people could understand that. I wish they could see that mental illness is not who I am. It doesn’t define me anymore than being short or having black hair does.

I’m often asked why I am so open about my challenges, why I put myself in positions to be judged. I’ve made sacrifices in order to be vocal and honest about where I am mentally. In my small way, I hope my transparency can help someone else come to terms with what they have.

It’s a constant fight but it’s a fight that I will always take on. If I want to stay alive, I have no choice. And I do want to stay alive.

Bassey,Thank you so much for sharing your story. You are very strong to be open with what you have been through. I too am bipolar and am willing to share my experiences. It does help others going through the awareness process as well as family, relatives and friends. Thank you.

Thanks for sharing. It is important for us to be open so that people coming behind us can see that we can have these issues and still have productive, happy lives. I too lived for years with that others "would find out" that I "wasn't right."

As a mental health professional I do agree that the mental illness affects us all and we need to be proactive about it. It hurt to see others in a turmoil that goes on for decades without getting the necessary help. As a field advocate for suicide prevention, my overall focus is to encourage others to seek the help they need so that they can live! So I encourage other professionals to advocate for mental illness because it affects everyone.

As someone else with bipolar II, it gets better! I was first diagnosed when I was twenty, young, idealistic, in college experimenting with drugs. I lived off and on in denial of the diagnosis for a couple years, taking meds sometimes or not at all. Not just because of my denial, but because of the terrible stomachaches Depakote gave me and feeling listless and lacking thoughts or emotional reactions. Part of that was frankly just because my psychiatrist sucked --- she mainly specialized in geriatrics and didn't know stomachaches were a common side effect or how I could avoid them by splitting the dosage and only taking it after food, and she never even suggested Seroquel as an option for me, so I stayed on Abilify which didn't help a whole lot for a while...

Congratulations on taking the first steps to a better future. I've been totally stable since January and now am gainfully employed at a desk job at a Fortune 500 company. I couldn't have done it without friends and family to get me through my fuckups and hospitalizations. Exercise and psychotherapy also really important. With time the craziness or disembodied and different high and low persons you have felt like will grow distant, a nightmare that's over.

And now that you've been through the worst of it, you can help others with mood disorders who are or might be bipolar avoid the detours and get appropriate treatment and stability faster. It feels really good to give back in that way. The long detour sucks!

I love someone with the same condition . I appreciate you candor and your voice. It is so important that this message reaches the African American community. So many of our people suffer in silence and the pain and stigma continues.Those that suffer from mental illness deserve love and attention .

I appreciate you willingness to share your story. Your voice is so needed in the African American community.. Not only yours but the voices of others that suffer in silence. It is so important for our community begin to understand and educate themselves and step away from the stigma.

This is a wonderful, honest message and I applaud you for speaking your truth. Truth is healing and brings us together in our struggles with bipolar. Yesterday my psychiatrist told me he is leaving the area. I thought, oh no! Now I have to attempt to build trust with another doctor. Every time this happens it makes me realize that I will have to be in relationship with a psychiatrist for life and there will have to be changes like this. So many challenges with bipolar. It sounds like you are moving on with your life with grace. I wish you all the very best in healing.

Thanks for talking about taking your meds continually. The first thing my sister (also BiPolar) told me was that when I started feeling "normal" and felt like I was healed and no longer needed my medication, it was because my meds were working. Not because I didn't need them anymore. She was speaking from experience. I could relate to much of what you wrote, and I'm grateful for your honesty and the information you gave.

Thank you so much for sharing, much of my own story, different diagnosis, but same battles, same or my own wondering if I can make it through the next whirlwind, my mental health dropping all the time due to a spend down. Sometimes, I plug away, just putting one foot in front of the other. Sometimes I actually get things done.Sometimes I don't. It's the self forgiveness I have a problem with, let alone a society that tells us mental illness does not count, does not matter. We know it does. We know help means the difference between life and death for some. Thank you again. Love and light. Lori

Thank you so much for being candid in sharing your story. It warms my heart to hear your positive determination. I am a parent of an adult living with mental illness and work to educate and advocate for awareness within our communities. Blessings to you!

Just this morning, going through old papers, I found an article suggesting that we change the name from "mental illness" to neurobiological illness to reflect the reality of the physicality of so-called "mental illness" and decrease the stigma. It's a long hard fight, but must happen. Again, my sympathy.

As a mental health professional and mother of an adult child that I highly suspect is bipolar, I so appreciate your words. The struggle to admit the problem is so difficult for the individual and the family. Thank you.

I am an Adult Care Facility (group home) operator. I take care of individuals with mental illness. You are a very brave young woman. Mental Illness has become a prevalent social ill in today's society, and when it's left unchecked, it can cause havoc. Talking about it, trying to understand it, and accepting it is not easy, but it's the beginning of mending broken relationships, and overcoming the many negative stigmas that are attached to it. Much success to you and your endeavors. Bravo for you!

Thanks, parents for helping us, youngsters (then). Now, thanks spouses for being there come rain or come shine. This is a typical story, very similar to mine, but mine is longer since I am older. Do, do, do stick with the meds, pleeeease. There are "bipolar safety plans" online, where one puts down all sort of information and then share it with at least one other person who can assess us at all times. Why? Because most of the time, when we make the decision to quit the meds, we do it because we are not "thinking straight." We feel that we are already far away from the last episode, and that in case of another one being close by, we can start medicating anew. That is not right: it takes several weeks for medication to start working (if it works at all.) In the interim we can move from mania to depression in a matter of hours, and we can take our lives because we can't tolerate the pain. So Bassey, thank you and keep on enlightening others. African American citizens ha had a curse of their own: being slaves, abused and discriminated to the present day (T. Martin). Mental health issues are forbidden in socially-depressed societies. Women still earn almost half of men. We have a long way to go. But you are a changer, and for that, we owe you.

Iam older then some of the people in the profiles I read. This doesn't matter... I've been struggling with bi-polor for many years now.. I only have 1 person in my family that reads and keeps u with the illness.. my youngest son..my sisters..my other son..and people who know I'm I'll...suggest things like= just get over it...you dwell on it... Drs' who diagnose this are crazy or in it for the money... So as you see...my family are of little help. My son and of course my Dr. encourage me to take my meds...the rest..tell me its all those pills you take that's making you sick. Even being hospitalized has not triggered a reaction to educate themselves... today... Iam reading all about people similar.. To Me. Iam in bed today.. Can't seem to get things done... and no energy. I take my meds.. but not as I should. But on the upside.. I'm smart... People like me..cause I'm a good actress... my mind races.. but when it levels and I can focus.. Iam happy for a few days...then..it starts again... A vicious cycle... I live alone, but I do know a lot about this illness and it helps.. writing and talking about it. I would like to help others and I think I could... yet I can't give my name..I still have the fear my family might find out... Sad.. but true....Thanks to everyone.. fo their testimonies... BRAVO..The foundations...thank you...

When I was diagnosed with Breast cancer a few years back, I reacted like most who receive a cancer diagnose; first thing came to mind was a “death sentence”. However, I found out later that it was truly “an awakening” for me. I began questioning God, why would you do this to me? What had I done in life so bad to have this placed upon me? But instead of bemoaning my fate, I decided to look for the positive side of it. There has to be a reason for it all.

I also realized that I was about to face a new beginning, new hope, do and see more with a whole new prospective on life. When I think of the “gift of life” that was given to me, I know that I will develop and gain strength from all my experiences. After going through all that I did during my breast cancer period, I was left with, what the MD's called “Neuropatic Pain”; a severe nerve damage diagnose. The pain is usually with you all day; and it times worse then others. Later I was diagnosed with “Lymphedema”. Of course I just kept smiling and saying to myself, “Oh lucky me”. For a while, I wasn't happy with the way I looked around my breast area after my first surgery, nor the pain I had to endure each day, but I decided to snap out of it. Even after being diagnosed with another cancer (colon) a few years later. Which totally took me by surprise. I had already had my time with cancer, I thought to myself. Why another one? I even make jokes at times, while crying inside asking, “what am I”, the cancer carrier? But even with the pain I have to endure through each diagnose, and all the struggles I've dealt with all my life, I still feel truly blessed. I think about the individuals that are no longer among us. I also realized that there will always be someone worse off than I am. I reminded myself, that I “still have my life” and who am I to complain.

One day during one of my surgeries, I experienced something of a miracle and felt the compulsion to write it down. I turn that experience into a poem and I called it “Peace”. Writing had become therapy for me. I took that poem, along with many others I had composed during my breast cancer period and placed them into book form. I was blessed enough to have that book published and it's titled “True Simple Poems of Life, Faith and Survival”. I later had another inspirational children's book published and I'm working on my third. I'm hoping that anyone who has the opportunity to read my poems, get out of them, what I placed in all of them. My poems are from the heart, as real as any could ever be. With the words and phrases of each poem of statement, I wish to make a positive impact on someone who's ill or otherwise, where they could develop the strength to embrace life in a whole new way. I never anticipated becoming a writer, I just became one. I truly believe when you survive a horrific tragedy or a horrible disease as cancer, it's for a reason, “you have a purpose” and I want to live to find find out exactly what that is for me.

That's what I'm all about now, inspiration. I would have never become a writer, producing inspirational poems and stories, if I had not gone through all that I did. I'm a true example that you can survive cancer not once, but twice, providing you catch it in time, have faith and allow that faith to direct your path. I've not saying all will be easy, but you must believe.